More on Chemo Brain

First, if you hadn’t figured it out already, my last post was not as much about chemo brain itself as it is me working out some of the things cancer is putting into perspective for me. This one will tell you more about what chemo brain is and how it’s showing up for me.

The American Cancer Society has a rather vague (IMO) definition for chemo brain.  The one I like best so far, because it’s way more inclusive of the symptoms, is the definition from Mayo Clinic. This article from the National Cancer Institute, the government research office, has more information about the various studies being conducted to see which therapies have a higher incidence of chemo brain and what studies are being done to counteract it.

Let’s be clear – the whole point of chemotherapy is to kill cancer cells. How it does this is to target cells that grow more quickly than others. Chemo doesn’t discriminate to target only cancer cells. It kills skin, blood, brain, liver, and other cells that are also quickly dividing. Your skin cells reproduce about once a week, blood replaces itself every 4 months, and there are some cells in your body that only reproduce every 7 years. It only makes sense that the cells in your brain that are doing a lot of active work to learn and store new things would be targeted by chemotherapy. During the week after chemo, I take an injection every day for 7 days to help build up my white blood cells to prevent infections. If they could figure this out, why isn’t there something more we can be doing to help our brains recover?

Radiation therapy does much the same as chemo except that it alters cell DNA. Like chemo, it doesn’t know the difference between what’s cancer and what isn’t, either. How this minimizes damage to “healthy” cells is how the radiation is targeted to various parts of the body. For me, it will be my chest and armpit where the cancerous lymph nodes are.

While the folks who study this stuff seem to think it’s the whole treatment package that causes these issues, I’m here to say it’s not. It’s just the chemo, and for me, just the AC chemo. So far. And if this is what’s happening now, after only 2 months, it’s not a stretch to understand that I’m not at all happy about this as I look down the road at at least another 8 months of chemo before this part of my cancer adventure is over for me.

Before my cancer diagnosis, I was on the road and not feeling myself, but not enough not myself to be too concerned. In hindsight, I should have been more concerned. I wasn’t because whatever was going on wasn’t interfering with my ability to function during the week while I was working – I worked some evenings and late nights and went to bed early on others. Not necessarily abnormal for me.

When I got my diagnosis, I also found out I had no iron. Not just low iron, but like next to none. There are a number of measures in your blood work that tell your doctor how much iron is in your blood and how effective your blood cells are at doing their job. Two that jumped out at me in that first blood test result were my serum ferritin level, which was 4 ng/mL. Normal is 10-205 ng/mL and my iron saturation (%), which was also 4 when normal is 15-50%.  So… severely anemic at the time, no? A month later, after taking double doses of iron, those numbers were back well into the normal range, and all the issues that should have been related to being anemic that weren’t there when I was anemic started popping up after my iron went up.

What am I trying to say? Well, when I had no iron and was chronically tired, I was still able to function like I always had.  I was doing a lot of complex tasks, multitasking and not making mistakes. I wasn’t forgetting what tasks I’d done or needed to do next. I was able to focus on tasks at hand without being any more distracted than normal. Yes, I was tired. Yes, I’d forget the occasional thing, but not like now. The biggest change in my life at this point is that I’ve been given high doses of two powerful chemo drugs.

What’s different now?

  • I can’t focus. Depending on where I am in the treatment cycle, I can’t focus to save my life, or toward the end, I can focus for a few minutes.
  • My short term memory sucks. I can’t remember what I did 5 minutes ago. I can remember the combination to the bathroom door at the acupuncture office where I haven’t been for 8 months, but I can’t remember where I put my glasses not 5 minutes after I got out of the car.
  • I have to keep an actual written list of things I need to do and check them off as I do them. This isn’t, and never has been, me. Outside of maybe an occasional grocery list. Seriously.
  • I interchange words. Words that are not remotely related to each other but start with the same letters. Banana can become Band-Aid. Unless someone catches me doing that, I have no idea that I did it.
  • Words escape me. I don’t usually have problems accessing my vocabulary. Now? It takes a good 30 seconds to a minute IF I’m going to remember the word. Sometimes they never come.
  • I’m having a hell of a time retaining things I’ve read. I’m trying to do some certification training for work. Before I would write down the things I was struggling with and remember that later. Not anymore. This truly sucks. And this piece, I don’t know how to fix or work around.

For someone who relies on a partially idetic memory, which means that I can usually picture the screen you’re on troubleshooting a computer issue, or details of things based on a picture in my head of the web page where I found the fix, this type of cognitive function loss is frustrating. Thinking about spending the next 5-20 years like this is not only scary, but unacceptable to me.

The oncologist and I will be talking about this on Friday. There are drugs coming out of studies at Sloan Kettering. There have to be supplements or enzymes that help. Knowing that pretty much every cancer survivor in the country has had this issue or is still experiencing this issue gives me hope that they’ll figure something out. Treating us like 80 year old dementia patients is no longer good enough.

About Pink Ribbon Road

This blog is about receiving and living with a breast cancer diagnosis.
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3 Responses to More on Chemo Brain

  1. Chemo brain is a completely different animal. It’s not like forgetting what you went to the living room for. I do that, too, but that’s not chemo brain. Chemo brain is probably more like having ADHD and getting Alzheimer’s at the same time. I remember things by seeing them in my head. There have been times that I was trying to picture something I read or whatever in my head and I just get a black screen. It’s never been like this for me. When words disappear, they’re gone for days, not minutes. When I was in the ER, I was talking to the dr about taking my parents out a week before. I told him we had been to La Conner, we ate at the Calico Kitchen and then went to the wood working store, which I’ve never known the name of, but know it’s there. Then we took a ferry to the Peninsula and went to CB’s nuts and then to Port Gamble. After that we went across to…. the town with the Sons of Norway post as you are coming into town. We went to Sluy’s bakery and the General Store, 2 doors from the bakery has the biggest licorice selection in the country. Y’know… what the heck town is that? It came to me a day and a half later that it was Poulsbo. I’ve been there a handful of times. I could not, for the life of me, remember the name. I saw a graphic the other day that said, “Dear Cancer, I’d like my vocabulary back. The other day I forgot the word for ‘car’. Thank you”

    The night sweats were probably a drug interaction. I stopped taking Airborne and they went away. Don’t know what it was reacting to, but I’m not eager to test it to find out. I like waking up only a little moist.

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  2. Renee Gjerde says:

    Are you still going through menopause? Because some of those issues with memory are what I am struggling with now, and I am either at the beginning or middle of menopause. Especially having to write lists, and not coming up with the word I want in English, anyway. I am having a few short term memory problems too, like going from the living room to the kitchen to get something, but forgetting completely what is was that I was going to get and returning to the living room, and then remembering again, what I meant to get. I am not having sweaty hot flashes, though sometimes at night I just have to take my covers off to cool down. Nothing during the daytime that i notice. I do not mean to say you don’t know what the hell you are talking about, but I am just relating to some of the issues you have and we are the same age. The ability not to be able to focus, and the ability to not be able to visualize things seems very related to the cancer treatment. I hope you have a good talk with your care team and can figure some of this out. Good luck!

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  3. Lisa says:

    Good luck! My cousin talks about her chemo brain still and its been 5 years. I dont notice her chemo brain. I just know its real.

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